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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Am I right to regret ever sleep walking into becoming my partners carer?

308 replies

RakshaUK · 11/10/2025 20:17

It started with getting up in the early hours to help him put his socks on to go to work. Then he developed leg ulcers, so showers became a performance because the dressing on the ulcers couldn't get wet, so I had to help putting a waterproof sleeve over them.
Then, about 15 years ago he started to develop a lump in his groin, GP thought it was a lipoma, said it could be removed when it became a problem. About 5 years ago - 2020 it was limiting his mobility to such an extent he couldn't walk from his disabled parking space to his desk (they did look at moving his desk under reasonable adjustments but it wasn't thought to be reasonable because they IT dept needed to be able to communicate easily). So the week before we went into lockdown, he took early retirement!
Basically he sat in his chair all day, wouldn't do anything else, and complained that he was losing his mobility. I pointed out on an almost daily basis that if he didn't use it, he'd lose it. GP sent a lovely chap to try and motivate him, he'd agree to all the tasks, then not do anything about them.
He's been referred to 3 different surgeons with regard to the removal of the lump (which is now so big it hangs like a good sized pumpkin between his knees), one took a look at his belly, which hangs infront of it after losing about 5 stone, and declared it was a pannus not a lipoma!
We've since moved and our current surgery are trying to get a MultiDisciplinaryTeammeeting together, including him, and me to act as his advocate, since July! He's spent 4 weeks in hospital with cellulitis.
What is really getting to me is his attitude towards me. E seems to do as little as possible and leaves me to clear up after him.I'm not one of nature's nurses, I feel like a caged animal listening to his moans and cries, and of course he must feel worse...
So WHY WONT HE DO ANYTHING ABOUT IT?
Even his nurses say he's got to be a squeaky wheel and on the phone to the GP Surgery every day. He does nothing to help himself, or me. I'm 65, older than him, with my own mobility issues (I use a power chair outside if I have to), I'm also type 2 diabetic and recently diagnosed ADHD and Autistic. I also have many incidents of trauma in my life which haven't all been put to bed. His nurse today suggested he make me a cup of tea every day (I have a shower stool out there to sit on when I'm cooking or washing up that he could use) doing that would double his step count for the day!
He passes wind, and doesn't apologise. He leaves shitty finger prints every where (he will go to the toilet for poos, but doesn't wash his hands) Wees he has to do by standing up while I shove a washing up bowl underneath him (the lump means he sprays wee everywhere and dribbles if he's anywhere near wanting to go when he walks) He can't wear underwear or incontinence pads because of the lump, trousers are a thing of the past, so he has a blanket across his knees to hide everything.
I like our house, i like sharing it with my two dogs and two cats. I have just had it up to here with being his carer.

OP posts:
Skybluepinky · 14/10/2025 15:41

You don’t have to be, you can leave.

Needspaceforlego · 14/10/2025 16:08

Op I'm glad you are asking for help.
It gives you a break and it might also force him to do more.

He doesn't care about the shit on his hands when its you thats cleaning it up. He just might care when its a stranger whos cleaning up after him.

It might also force him to chase the hospital for reason why the Op hasn't happened.

jeaux90 · 14/10/2025 16:13

He’ll be dead soon OP at this rate. He is ridiculously young to be so bloody useless. I’d be fuming. (I would have left years ago though)

Needspaceforlego · 14/10/2025 16:20

Op how did he manage in hospital?
We he peeing all over the ward?

Your house must stink, if hes dribbling urine everywhere.

RakshaUK · 14/10/2025 17:40

Tweedled · 14/10/2025 15:24

You need a social worker to help him get aids for the home so he can move around independently. They might direct you to a department of your local council who deals with the occupational health equipment.
I would ring your local council for detail of how to get a social worker.

He's had several OT visits to try and find solutions. Because he needs bariatrics equipment, it's generally too big for the bungalow and he struggled to use it effectively...he currently uses one of a pair of walking sticks he was given in hospital a couple of years ago. The other one was lost on his most recent visit to hospital. The large pumpkin size lump, and now the slowly increasing pannus (as he looses weight) really hinder him, throwing his balance off and putting a strain on his hips and knees.

OP posts:
RakshaUK · 14/10/2025 17:50

Needspaceforlego · 14/10/2025 16:20

Op how did he manage in hospital?
We he peeing all over the ward?

Your house must stink, if hes dribbling urine everywhere.

The lump shrunk dramatically and they would put a urine bottle over the outlet which was visible when the lump was lifted.
I struggled hard to make sure it doesn't stink I can assure you. He wees before he goes to the living room and again before he goes to bed. His chair is protected by washable covers which i try to make sure are changed regularly. I've washed my hands (so to speak) of his bedroom after replacing the mattress and all the bed linen in early September.

OP posts:
Kendodd · 14/10/2025 17:57

Only read a few posts but this man sounds like the creator of his own disability.

Kendodd · 14/10/2025 17:59

Tweedled · 14/10/2025 15:24

You need a social worker to help him get aids for the home so he can move around independently. They might direct you to a department of your local council who deals with the occupational health equipment.
I would ring your local council for detail of how to get a social worker.

From the OPs posts, I don't think he'd use the mobility aids.

Needspaceforlego · 14/10/2025 18:06

Op has he been making any effort to keep his bedroom clean?

I don't doubt you are trying hard.
I would be tempted to replace carpets with vinyl, vinyl rather than laminate, laminate has joints.

LittleMissPidge · 14/10/2025 18:40

Buffypaws · 11/10/2025 21:25

You need something I saw at the filia conference today.

Yes! Haha

Lougle · 14/10/2025 21:49

RakshaUK · 14/10/2025 17:50

The lump shrunk dramatically and they would put a urine bottle over the outlet which was visible when the lump was lifted.
I struggled hard to make sure it doesn't stink I can assure you. He wees before he goes to the living room and again before he goes to bed. His chair is protected by washable covers which i try to make sure are changed regularly. I've washed my hands (so to speak) of his bedroom after replacing the mattress and all the bed linen in early September.

There are devices available that can help. If you Google 'Incontinence solutions for men with a pannus' there are several different options that would help him remain continent until he got to the toilet.

RakshaUK · 14/10/2025 22:22

Lougle · 14/10/2025 21:49

There are devices available that can help. If you Google 'Incontinence solutions for men with a pannus' there are several different options that would help him remain continent until he got to the toilet.

Thank you, I have looked at those.
They spent 3 hours trying to get a catheter in a year or so ago. The tissue from the lump (not the pannus) compresses the urethra and the penis is completely enveloped by it. They've also tried to investigate with a camera but couldn't get it up there. Next step will be doing it under anesthesia.

OP posts:
RakshaUK · 14/10/2025 22:24

Id like to thank everyone who has taken time out of their day to respond, give advice, or just vote.
It's been a huge help.

OP posts:
Needspaceforlego · 15/10/2025 00:31

RakshaUK · 14/10/2025 22:22

Thank you, I have looked at those.
They spent 3 hours trying to get a catheter in a year or so ago. The tissue from the lump (not the pannus) compresses the urethra and the penis is completely enveloped by it. They've also tried to investigate with a camera but couldn't get it up there. Next step will be doing it under anesthesia.

Op you say he's loosing weight. Is that a conscious decision (diet / injections) or is something else causing weight loss?

Just trying to figure out if he is trying to improve his situation.

AstonUniversityPotholeDepartment · 15/10/2025 01:39

When he does urinate, he needs to be double voiding.

Sounds to me like one factor in the dribbling of urine when he moves could be incomplete emptying of his bladder. One way to double void would be for him to urinate into the basin or urinary bottle, and then to stand up momentarily. When he sits back down, the urine stream will restart.

Double voiding: Definition, additional techniques, and importance

Frequent urination can disrupt daily life and your sleep pattern. Double voiding is a method of managing frequent urination at home. What is double voiding, why is it important to fully empty the bladder, and what are other bladder emptying techniques?...

https://www.medicalnewstoday.com/articles/316706

Lucytheloose · 15/10/2025 05:57

TheClanoftheDook · 12/10/2025 11:03

Just saw you have grown up sons. Where the hell are they in all this?!

Keeping away from this literal shit show, presumably. Who can blame them?

Needspaceforlego · 15/10/2025 07:37

AstonUniversityPotholeDepartment · 15/10/2025 01:39

When he does urinate, he needs to be double voiding.

Sounds to me like one factor in the dribbling of urine when he moves could be incomplete emptying of his bladder. One way to double void would be for him to urinate into the basin or urinary bottle, and then to stand up momentarily. When he sits back down, the urine stream will restart.

I don't think you have grasped the problem.
His penis is surrounded by a growth. Look up genital lymphodema.

I watched a documentary on an American man with it years ago. The tv program paid for his surgery, he wasn't insured to get it dealt with. His was seriously huge but he didn't also have obesity issues.

Lougle · 15/10/2025 08:52

RakshaUK · 14/10/2025 22:22

Thank you, I have looked at those.
They spent 3 hours trying to get a catheter in a year or so ago. The tissue from the lump (not the pannus) compresses the urethra and the penis is completely enveloped by it. They've also tried to investigate with a camera but couldn't get it up there. Next step will be doing it under anesthesia.

Has anyone considered using a suprapubic catheter? It would bypass the whole tubing system and go straight into the bladder. It might improve his quality of life (and yours!) drastically.

RakshaUK · 15/10/2025 09:04

Needspaceforlego · 15/10/2025 00:31

Op you say he's loosing weight. Is that a conscious decision (diet / injections) or is something else causing weight loss?

Just trying to figure out if he is trying to improve his situation.

Very much a conscious decision. Unfortunately as the weight is coming off , the lump is getting larger 😞

OP posts:
RakshaUK · 15/10/2025 09:06

Lougle · 15/10/2025 08:52

Has anyone considered using a suprapubic catheter? It would bypass the whole tubing system and go straight into the bladder. It might improve his quality of life (and yours!) drastically.

No , because the area it would have to enter the body is covered by the pannus

OP posts:
RakshaUK · 15/10/2025 09:09

AstonUniversityPotholeDepartment · 15/10/2025 01:39

When he does urinate, he needs to be double voiding.

Sounds to me like one factor in the dribbling of urine when he moves could be incomplete emptying of his bladder. One way to double void would be for him to urinate into the basin or urinary bottle, and then to stand up momentarily. When he sits back down, the urine stream will restart.

He already urinates standing up.

OP posts:
Lougle · 15/10/2025 09:10

RakshaUK · 15/10/2025 09:06

No , because the area it would have to enter the body is covered by the pannus

I feared you may say that. I'm so sorry you're living with this. It's absolutely miserable.

AstonUniversityPotholeDepartment · 15/10/2025 10:05

RakshaUK · 15/10/2025 09:09

He already urinates standing up.

Yes, that tracks. I have seen it recommended before that men who stand up to urinate should walk around and then return to the toilet to stimulate more urine flow.

Sitting down and then standing back up also works for men in my experience.

Would he be willing to try either of these techniques?

RakshaUK · 15/10/2025 10:09

AstonUniversityPotholeDepartment · 15/10/2025 10:05

Yes, that tracks. I have seen it recommended before that men who stand up to urinate should walk around and then return to the toilet to stimulate more urine flow.

Sitting down and then standing back up also works for men in my experience.

Would he be willing to try either of these techniques?

It's possible, I'll certainly suggest it. Thank you.

OP posts:
AstonUniversityPotholeDepartment · 15/10/2025 10:11

Needspaceforlego · 15/10/2025 07:37

I don't think you have grasped the problem.
His penis is surrounded by a growth. Look up genital lymphodema.

I watched a documentary on an American man with it years ago. The tv program paid for his surgery, he wasn't insured to get it dealt with. His was seriously huge but he didn't also have obesity issues.

No, I got that bit already, but thank you. Between the growth and his obesity, it seems plausible his bladder is being compressed, don't you think? That will lead to urinary retention. It's obviously not the only reason he's experiencing dribbling, but if any of the double voiding techniques can work for him, it will help.